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Spina Bifida (Myelomeningocele)

Spina Bifida (Myelomeningocele)

Spina bifida literally means “cleft spine.” It occurs in roughly three of every 10,000 live births in the U.S., making it the most common birth defect of the central nervous system.

Myelomeningocele, or open neural tube defect (NTD), is the most severe and most common form of spina bifida. It occurs when the spinal cord or other neural elements are exposed by an opening in the spine. This results in partial or complete paralysis of the parts of the body below the opening.


An NTD may occur anywhere along the length of the spine, though it is commonly located at the lower back at the lumbar and sacral vertebrae.

Patients with spina bifida and other NTDs have abnormal function of the spinal cord and nerves in the involved area of the spine. Therefore, it is common for these patients to have abnormal function of their bladder, bowels and legs.

Hydrocephalus, characterized by fluid in the brain, is also common in a baby with a NTD. Hydrocephalus is thought to occur because abnormalities in the back of the brain and spinal column block circulation of the fluid that surrounds the brain (cerebrospinal fluid).


Symptoms and Causes

The exact cause of neural tube defects remains unknown. Scientists think that genes, nutrition and environmental factors all play a role. Research indicates that insufficient folic acid—a common B vitamin—in the mother plays a role in causing spina bifida and other neural tube defects.
Women who already have a child with spina bifida, who have spina bifida themselves, or who have already had a pregnancy affected by any neural tube defect are at greater risk of having another child with a neural tube defect.


Diagnosis

Spina bifida and other NTDs are most often diagnosed during a routine second trimester ultrasound. The most common symptom visible is a fluid-filled sac on the back—protruding from the spinal canal, most often at the base of the spine.

Other tests that may be used to diagnose spina bifida and its severity include maternal serum alpha fetoprotein (MSAFP) screening, fetal ultrasound or amniocentesis.

In less severe cases, a neural tube defect may not be detected until the baby is born.


Treatments

The doctors at the Texas Children’s Fetal Center will perform a thorough evaluation of your pregnancy. You will meet with pediatric neurosurgeons and pediatricians who specialize in the long-term care of babies with spina bifida. They will review the diagnosis, the range of possible outcomes and treatment options.

Surgery after birth: The NTD can be repaired through surgery in the first few days of life, but many babies develop hydrocephalus and require shunts for life. Until recently, after-birth repair of the defect was the only treatment option. It may still be the only choice to repair some neural tube defects.

Surgery before birth: In the case of spina bifida the nerves are exposed to amniotic fluid within the uterine environment which can further damage the spinal cord. For this reason physicians studied the prenatal repair of NTD with the hope that it would improve postnatal outcomes.

This study, a randomized clinical trial, also known as the MOMs Trial, was able to show that fetal surgical repair of myelomeningocele (MMC) leads to decreased rates of hydrocephalus and improved leg function compared to the standard after-birth repair. However, the study also found complications that could occur in some fetuses that had fetal surgical repair, such as early birth, and rarely, death.

If you and your baby are both candidates for fetal surgery, you will meet with a group of fetal specialists who will discuss the risks and benefits of the procedure in detail to help you and your family decide the best treatment approach for you.

Fetoscopic surgical repair can lead to longer gestation, improved outcomes, lower rates of hydrocephalus, decreased need for shunts and improved leg function compared to after-birth repair. It may also preserve the mother’s ability to deliver vaginally following the initial repair and for all future subsequent births.

Texas Children's Fetal Center was one of the first centers to successfully perform open fetal surgery to treat spina bifida in 2011.The procedure has had good outcomes, but it also carries risks, including increased incidence of preterm birth, cesarean section and uterine rupture. Another option of prenatal repair is the fetoscopic method. Texas Children’s Fetal Center is one of the only centers in the U.S. that offers fetoscopic repair surgery for spina bifida. Read more about fetoscopic repair for spina bifida.

Another option, fetoscopic repair of spina bifida, is a minimally invasive surgery. Texas Children’s Fetal Center is one of the only centers in the U.S. that offers fetoscopic repair surgery for spina bifida. Read more about fetoscopic repair for spina bifida.

For more information about the Spina Bifida Program at Texas Children's, click here.

Inclusion and Exclusion Criteria

Comprehensive evaluation of each individual pregnancy is essential to determine whether fetal surgery for myelomeningocele is an appropriate intervention.

Patients who meet all inclusion criteria and none of the exclusion criteria of the MOMS trial are considered candidates for prenatal spina bifida repair. Patients are counseled on both open-hysterotomy repair and fetoscopic repair and understand that open-hysterotomy is the clinical standard of care for prenatal repair and fetoscopic repair is considered experimental and performed under an IRB-approved protocol in our institution.

We welcome all referrals as candidates are evaluated carefully and accepted for maternal-fetal surgery on a case-by-case basis. Please contact us at 832-822-2229 if you are a physician and would like to discuss the eligibility of your patient for the fetoscopic procedure.

Guidelines for both fetoscopic and open procedures are based on the criteria set forth by the MOMS trial†.

†Adzick, S., Thom, E., Spong, C., Brock, J., Burrows, P., Johnson, M., Farmer, D. (2011). A randomized trial of prenatal versus postnatal repair of myelomeningocele. New England Journal of Medicine, 364, 993-1004.

Inclusion Criteria

  • Myelomeningocele at T1 through S1 with hindbrain herniation, level of MMC confirmed by ultrasound and hindbrain herniation confirmed by MRI
  • Maternal age greater than or equal to 18 years
  • Gestational age 19 0/7 weeks to 25 6/7 weeks at the time of prenatal surgery
  • Normal karyotype or FISH
  • Normal fetal echocardiogram
  • Singleton pregnancy
  • Willing to remain close to Texas Children's Hospital
  • Placenta abnormalities (previa, abruption, accreta) known at the time of enrollment. 
  • Umbilical cord hypercoiling, or velamentous cord insertion
  • BMI > or = 40
  • Low amniotic fluid volume (Amniotic Fluid Index less than 6 cm) if deemed to be due to fetal anomaly, poor placental perfusion or function, or membrane rupture. Low amniotic fluid volume that responds to maternal hydration is not an exclusion criterion.
  • Maternal HIV, Hepatitis-B, Hepatitis-C status positive because of the increased risk of transmission to the fetus during maternal-fetal surgery. If the patients HIV or Hepatitis status is unknown, the patient must be tested and found to have negative results before enrollment.
  • Maternal hypersensitivity to collagen

Exclusion Criteria

  • Significant fetal anomaly not related to MMC
  • Kyphosis in fetus of greater than 30 degrees
  • History of incompetent cervix, cervix less than 20mm or presence of a cerclage
  • Maternal – fetal Rh isoimmunization, Kell sensitization or a history of neonatal alloimmune thrombocytopenia
  • Uterine anomaly such as large or multiple uterine fibroids or mullerian duct abnormality
  • Maternal medical condition which is a contraindication to abdominal surgery or general anesthesia
  • No support person to stay with mother at Ronald McDonald House
  • Patient does not meet psychosocial criteria as determined by the social worker evaluation
  • Previous hysterotomy in the active segment of the uterus either from previous classical cesarean section, uterine anomaly such as an arcuate or bicornuate

Patient Stories

God's answered prayer: Olivia

At their 18-week ultrasound, expecting parents Ashley and Jason learned their daughter, Olivia, had signs of spina bifida. Learn more about their journey at Texas Children’s Fetal Center and how the Fetal Team saved their daughter’s life with this innovative fetal surgery.

Learn More


Canezaro Family first to undergo successful two-port fetoscopic spina bifida repair in U.S.

When Althea Canezaro found out she was pregnant, she was thrilled to give her son, Blaine, a sibling. But, her 22-week ultrasound revealed something she didn’t expect - spina bifida. 

Learn More


Less Invasive Approach to Fetal Spina Bifida Repair

Julia Wallace vividly remembers the moment a routine ultrasound revealed her unborn daughter had myelomeningocele, a type of spina bifida.

Learn More


The Future of Healing for Neural Tube Defects

Like most first-time parents, Johnna and Adam Kerres of Rock Island, Illinois, were excited to mark every milestone of their pregnancy. Until, that is, an ultrasound at 18 weeks revealed their baby boy Everett had spina bifida.

Learn More


Surgery Before Birth Changes Abdiel’s Life

Texas Children’s Hospital fetal surgery to repair spina bifida birth defect saves child from paralysis, brain damage and other life-altering complications.

Learn More


Volumes and Outcomes


Research and Clinical Trials

Texas Children’s Fetal Center participates in research and clinical trials in order to offer its families the broadest number of options to treat neural tube defects. Learn more about these trials:


In the News

Please call (832) 822-2229 or 1-877-FetalRx (338-2579) toll-free to discuss a specific case or diagnosis with a physician from Texas Children’s Fetal Center. Available 24/7. Immediate appointments often are available.